Acceptance Archive

17

When My Will Is Weak

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It does not matter how slow you go so long as you do not stop. –Confucius

MS is like a thief in the night, stealing the fortitude of its victims. It especially takes advantage of those who have given up or can’t muster the strength to fight anymore.

For me, everyday is a battle with MS. My struggle is not only a movement in opposition to a debilitating disease but also a fight for a fulfilling quality of life. I use every available tool and possible weapon in my personal war against MS. Medicine, food, exercise, and spiritual guidance all play an important role. Most of the time this arsenal is very effective and shields my body from the impinging effects of the disease. But every now and then I am sucker punched with a new symptom that knocks me for a loop. When that happens I try to gather my thoughts and seek counsel from my life advisors, which include family, friends, doctors and my spouse. When my decision-making skills are weakened by sudden medicinal changes these people are able to recognize that I am at my most vulnerable and provide much needed support.

New symptoms steer me towards worse case scenarios and distract me from solutions. I become despondent, believing that my latest flare-up will take over my life. Whenever I am in this situation, MS becomes my personal devil. It spits fire at my soul, burning away pieces of my spirit. First, my confidence and ambitions are damaged. Then my faith and hope are tested until my essence is destroyed to the point that my former self is no longer living. I become a different person who struggles to establish a new purpose. Flashbacks to the individual I used to be haunts my contemporary identity and grow to be the foundation of depression. Malevolent thoughts rage an internal battle that deliberately attempts to control my existence. Suddenly my inward struggles become just as stark as the outward ones.

Every outing is a circus where I am the sideshow freak on display for everyone’s amusement. My life reflects a car wreck that is highlighted by twisted metal and broken parts. As people pass they look and discretely stare, hoping to get a glimpse of my damaged remains. My mind goes a thousand miles an hour, with only the most awful circumstances passing through every few minutes. My entire being is pushed to the edge where I start to conceive alternatives to continuing in my living hell.

At this point I am usually at the end of my rope. Without intervention I am apt to make horrible and regrettable decisions. I have been known to change medicines, begin fad diets and try to isolate myself from the outside world. My support group has been my savior in this situation by not allowing me to become out of touch. I am blessed to have such a compassionate collection of people in my life. They don’t pity me they help me. They stand strong for me when I cannot. They fight for me when my will is weak.

Originally appeared on MultipleSclerosis.net

27

Mourn The Loss

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While grief is fresh, every attempt to divert only irritates. You must wait till it be digested, and then amusement will dissipate the remains of it. ~Samuel Johnson

It’s a good thing that my caregiver/husband and I get along, because I never would’ve imagined depending on him so much.

In the beginning of this newfound dependency on others, I was not a happy camper. I probably was defensive to the very people that were trying to help me. It’s just that we all have this picture of what life should look like and my reality just was not matching up.

Nowadays it seems I need help with just about everything. And to make matters worse or more complicated for all involved, I don’t need that help all the time. This confuses the person, normally my husband, as to when to help and when not to help.

Does that make sense?

I know he is only concerned about me. In the meantime, I’m so busy trying to hang on to my last bit of independence by continuing to do what I can on my own. I think this is a good thing.

I also have to accept there are things I can no longer do safely by myself. For instance, I need help getting on and off the toilet. It’s not every time I go, mostly just during the night or early in the morning. The other day, I had a nasty fall in the bathroom and it scared the life right out of me. Mind you my bathroom was newly made handicapped accessible. So, it seems no matter what, falls can happen.

I need help with transferring from one chair to another. That is, transfers from my scooter or wheelchair to the dining room table or to my favorite reading chair. Something I used to do with no problem.

I’ll be honest with you. It’s hard. To make it easier I quickly mourn the loss then I move on. The thing is, if I persist on focusing on what I’ve lost here, I will lose and MS will win once again. And it has taken away so much from me already.

I try to remember that our job as MS fighters is to make the most out of what we can do, no matter how small.

40

Square Peg

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“I’m just a square living in a round world.” – Philip Phillips

One of the things I hate most about being sick is that I feel as if society has forgotten about me. It’s just so hard to fit in when I can’t drive, I get tired so fast, and going to the restroom is an adventure. So since I just can’t do normal things, it’s as if I’ve just disappeared. The old Nicole is missing without a trace and the new Nicole is so misunderstood that most people shy away from spending time with her.

So instead of just sitting on the sidelines waiting to be accepted I have to remember that there are a group of people who I always have a great time interacting with. They are those who are on a similar path as me. My MS peers.

At a recent MS Blogger summit I attended, I felt a certain comradely with fellow attendees. At the heart of multiple sclerosis lies loneliness. Sometimes, no one is there to dry your tears. No one you tell understands your difficulties. No one in your life can comprehend the emotional and physical pain you can experience every minute of the day.

But this weekend, I had a group of people who did understand. So in consequence, I welcomed the chance to be surrounded by folks like me. It doesn’t happen too often. So during the event at every meeting and every bathroom break that forced interaction was welcomed. And when I talked, I felt heard. This made my insides smile. The event reminded me how important it is to get out and mingle with peers.

So for one weekend, I was happy the entire time. Maybe because for the first time in a long time for me, the square pegs out numbered the round holes.

49

Truth Hurts

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“Three things cannot be long hidden: the sun, the moon and the truth.”

As my legs and now arms continue to betray me, I can honestly say my greatest fear in life is becoming uncommunicative, bedridden and losing my sense of purpose and significance in life.

Nothing new has happened, this is just the way I’ve felt for a long time and have told very few. Why? Because most people just won’t understand. It’s just that life can be unknown, real and very scary for any person living with a chronic illness.

In my case, I haven’t significantly responded to any therapy with the exception of chemotherapy. So right now, I’m feeling a bit bitter and put out. I need to get it out of my mind that my MS is not a common cold. I have an incurable chronic progressive and often disabling disease.

In truth, I put this out there so I can essentially release this fear. I do that so it will not inhibit me from doing what needs to be done in this present moment. I’ve watched people become mentally engulfed by their illness. Their happiest memories are trapped in their past and they feel that their future is so unpredictable that it’s difficult to see any light. That was me. I felt like I couldn’t breathe without inhaling fear.

But now I face my fears with the truth. I understand my circumstance and I don’t worry about the things I can’t control. When I’m in my darkest hour I try to look for the light. And that light is here. It’s right now. It’s this present moment.

I know that I can control what is happening at this moment. It is my choice. So I choose to…be happy.

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34

A Night Out

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The other night my husband and I went on a good old fashion date. We left my MS with a sitter and headed to a concert at a local nightclub. Of course, I was in my ever-present handy wheelchair decked out with mountain bike wheels. I was also in a good mood and ready to take on the winter air.

We arrive at the club. We are early and due to my wheels, they put us first in line. When the doors opened the guards ushered us straight in. Subsequently, we had first row standing room only positions. I was thrilled. I was proud of myself for even going. I left the confines of my laptop and condo. My biggest worry was keeping my bladder in check.

The night began with a local female disc jockey. For some reason I felt a shared feminine connection. She was dong what she loved to do, despite the odds that stack against her. I like to think, I am too.

An hour later, the funk star, George Clinton & Parliament Funkadelic, arrived and nonchalantly passed directly in front of us! For those of you who are unfamiliar with his iconic status, the closest person I can compare him to is the late great Rick James.

Within minutes the house was packed. Still, George Clinton himself managed to greet me in person. It was the highlight of the night. Really, I think his security detail was concerned about a possible stampede.

George Clinton, “The Atomic Dog”, stopped to talk to me.

I’m not claustrophobic, but even the most stoic of us would have been a bit taken aback. Not even the oh so strong smell of marijuana could keep me calm. Since I was sitting, I felt that people were engulfing me. I think my husband saw my level of anxiety rising. He gently grabbed my hand; something he seldom does, in this case it only confirmed we were in a sticky situation.

A little over half way through the show we decided to leave. We received special permission to exit through the artist only door. There was no way we could make it back through the crowd to the normal exit.

After all, an hour and a half was good for me. I was drained. I met George. I was ready to go; besides, I had to go to the restroom!

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9

Thank U

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I want to thank everyone for their support this year. You all have helped us in our goals to raise awareness and educate the public about Multiple Sclerosis.

2013 was a great year for My New Normals and 2014 looks just as promising. We will continue to provide an outlet to family, friends, caregivers and anyone living with MS or any other debilitating disease.

The most important and interesting part of the website are the comments. So thanks to everyone who has left a comment. And even if you haven’t left a comment just visiting the website raises the number of visitors which elevates the profile of the site.

Once again, thank you to our partners, friends and family. Cheers to a symptom free 2014 and hopefully there will be no need for this website in the near future.

Happy New Year,
Nicole

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23

Greater Than Myself

That’s me in church looking for answers.

“There is no passion to be found playing small – in settling for a life that is less than the one you are capable of living.” – Nelson Mandela

Strange how I continue to pray to a God, who has put me or has allowed me to be this way.

I went to my neurologist yesterday, a visit that never offers comforting answers or clever solutions. He does his job. He is a bona fide neurologist. Not God, that’s for sure.

Years ago, when I was first diagnosed, I received an MRI (magnetic resonance image) scan. The MRI is a diagnostic tool used to treat multiple sclerosis. It tells doctors how many lesions or scars you have on your brain (hence multiple). Every time you get a new lesion they proceed to change your medication. I have in turn tried nearly all medications that are offered including chemotherapy.

I nevertheless asked my doctor, “Why have I not had an MRI recently?” (Keep in mind he is the same doctor that already told me, I have too many lesions to count.)

He began explaining that if he did an MRI and it showed new lesions, I’ve already been on all the drugs available. Because of that, there is nothing more they can do for me.

That was hard to hear.

In the past, I would have exclaimed under my breath, “Oh, but you don’t know my God!”

But the truth is neither do I.

I do know however, that through this all, there must be someone greater than myself that has kept me going thus far.